P***ed off with it

[Blackradish]

I have injections every 12 weeks , due one next week my feet and legs are burning, tingling , I only feel well for about 3 weeks out of 12

[SunnyWorld]

Same here but mine every 6wks. You are entitled to every 2 months now if required.

[Blackradish in reply to SunnyWorld]

Thank you I will try x

[fbirder]

Ask your doc to check the British National Formulary. The recommendation for hydroxocobalamin has recently been changed from 'every 3 months' to 'every 2 to 3 months'. Ask for 2 monthly jabs.

medicinescomplete.com/#/con...

[Blackradish in reply to fbirder]

Thank you I will try x

[Gambit62 Administrator]

Blackradish - just to let you know that I have amended the title of your post slightly

[Blackradish in reply to Gambit62]

Sorry, I was just how I felt at the time

[Gambit62 Administrator in reply to Blackradish]

I understand - probably a bit over cautious from my side ... and milder than some expressions of frustration I have seen elsewhere

[Blackradish]

😁

[Sleepybunny]

Hi,

Link to BNF info on UK B12 treatment

bnf.nice.org.uk/drug/hydrox...

PAS news item about recent change to BNF

pernicious-anaemia-society....

How many loading jabs did you have at start of treatment?

If you have tingling and burning sensations these are usually considered neurological symptoms.

Do you have other neuro symptoms eg numbness, brainfog, tinnitus, tremors, restless legs syndrome, word finding problems, memory problems, balance problems etc ?

If yes to neuro symptoms, is your GP aware of all of them?

Recommended UK treatment for B12 deficiency without neuro symptoms

6 loading jabs over 2 weeks followed by a jab every 2 or 3 months

Recommended UK treatment for B12 deficiency WITH neuro symptoms

A B12 jab every other day for as long as symptoms continue to get better (could mean every other day jabs for weeks even months) then a jab every 2 months.

If you have been getting regular jabs every 3 months, I suspect that your GP is not aware that in UK, patients with neuro symptoms should have maintenance B12 jabs every 2 months.

I also suspect that you may not have had recommended pattern of loading jabs at start of treatment.

Link about writing letter to GP if being under treated for B12 deficiency WITH neuro symptoms

b12deficiency.info/b12-writ...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Many UK forum members resort to self treatment because they cannot manage on recommended NHS treatment.

I am not medically trained.

[Blackradish in reply to Sleepybunny]

I have brain fog, eyesight blurry , burning feet and legs feel strange, hard going doing 12 hour shifts

[Hidden]

There is just one redeeming aspect to B12 deficiency Blackradish which is the solution to many problems such as you describe is in your own hands, literally. If you need injections earlier than 2 or 3 months then self injection is easy, quick and inexpensive. Read through the threads on this site and you will see how many of us have found salvation in this.

This is just my personal opinion though as I am merely a sufferer not a medical professional.

(It is a bit of DIY not involving hammers and saws)

[Ryaan]

You need to buy some I jections and self inject unless your Gp treats you properly which I doubt very much.

You need an injection before the return of “start of symptoms” which would be before 3 weeks for you.

I also get return of symptoms in week 3 so I inject every 2 weeks.

Also make sure your Folate and Iron is in good range and you’re not deficient on anything else.